Hi all,I am on W&W 2 years and I am worried that CLL might have some links to being inherited? My specialist says it does not but I have read on here somewhere that there are some links, where more that one family member has CLL. My 15-old daughter has been feeling extremely tired in the past couple of months, falling asleep at 7pm so we had a fasting blood test done and it shows Low Platelets and MCH, while the Albumin shows as high. What could this mean and am I panicking for nothing? I attach the full blood test result and would really appreciate your opinions. I cannot ask the doctor who did the blood tests as my daughter does not know about my CLL and I would like to ideally keep it that way for now. But at the same time, if there is any possibility of her inheriting CLL I know that I would have to tell her...
⁹Low Platelets and MCH in daughter's blood test - CLL Support
⁹Low Platelets and MCH in daughter's blood test
It's extremely unlikely that your daughter is inheriting your CLL for several reasons:-
1) It's an older person's disease. The chances of someone developing it at her age are listed as 0.0% in the US and 0.3% between the ages of 20 and 34.
2) CLL is quite a rare cancer. Women are around 30 times more likely to develop breast cancer than CLL.
3) Your daughter's blood counts are normal.
4) CLL most often shows as a high lymphocyte count. Your daughter's white cell count is in the healthy range. It's actually on the lower side of normal.
5) The only test result that is below the reference range is the Mean Corpuscular Volume. That's because her red cell count is close to the upper limit and her haemoglobin is close to the lower limit. Again, both tests are in the normal range. Perhaps the reason for her low MCH is as simple as inadequate iron in her diet or heavy periods.
In summary, there's really nothing worth being concerned about in those results. In the future, It might be worthwhile seeing her doctor if her haemoglobin doesn't improve with additional iron in her diet.
Neil
Oh, thank you so much, that is so reassuring!
I've edited my reply with a tip.
I had a friend who went vegan but gave it up after 2 years because he was tired and felt beaten down all the time. You should definitely check her diet.
Hi Titian72,
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IMO- AussieNeil provided an excellent answer.
I would add a minor point, that she and you should consider testing for the HHV viruses.
HHV-4 aka Epstein Barr Virus or Mononucleosis (Mono) is common among teens kidshealth.org/en/teens/mon...
We CLL patients are susceptible to having outbreaks or reactivation of several of these viruses (I have a refractory infection of HHV-6a, that does not respond to treatment)
Your compromised immune system can allow you to be infected or re-infected with many diseases we consider common among children but rare among adults.
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Len
Oh, very useful, thank you! 🙏
absolutely agree with lankisterguy. In fact, my CLL got diagnosed after such a low level of energy I recognized it as mono-like -- and it was EBV (which, at my age, I shouldn't have again--which led to CLL diagnosis). But pretty much everyone gets EBV initially, and normally, as a younger person. Not related to CLL at that time. So do have her tested.
I was wondering if she’s anemic that tends to happen about that age. I’d like to share with you about my experience of my husband and I telling my stepdaughters. I don’t share that I have CLL with a lot of people, I have concerns about work and getting hired, but in making that decision I feel like I am caring a dirty little secret and really eliminating a possible supportive environment.
I was shocked when Chadwick Boseman died and empathized that he wanted to be private with his battle. I see the impact/aftermath of all of his costars grief and wonder if I’ve made the right decision should something go badly.
I was diagnosed at 46, my stepdaughters were 11 and 9. We told them that I will take a pill 2x a day for the rest of my long life. And it doesn’t seem to have really impacted them. I did get hives everywhere 4 weeks in on Inbrutinub and that freaked them out, me too 
moved to Acalbrutinib. Now, I am the step, but they do look at me like a bonus mom. I did add the Venclexta a year ago and chose not to tell them. If something went wrong, I didn’t want to worry them, so I understand your dilemma. I plan to tell them when I am cancer free, hopefully next year, for some amount of time. I don’t know if telling them originally was the right decision, or not telling them about my treatment now is the right decision. I will say they the under play my treatment like I’m taking vitamins every day.
My uncle was diagnosed W&W two years ago at 68, and will probably never have to be treated. There’s not supposed to be a genetic component, but in our experience, there seems to be an awfully big coincidence. If there is a genetic component, I’d like to know. Best of luck to you this stuff is not easy to navigate.
Hey Titian
First of all there is absolutely no question that CLL can run in families. My Primary doctor once told me that there is no genetic link with CLL, after I told him I was concerned about the rise in my WBC over a couple of years beyond the high for Normal. He said there is no inherited CLL and that there was likely other reasons my WBC was high.
I knew for a fact that he was wrong, without ever reading about it, but I didn't want to argue with him. So on my own in 2016 I scheduled an appointment with a Hematologist at my local Cancer Center. At that point my WBC had reached around 13,000, and her tests showed my Monoclonal B Cells were at around 4500. 5000 is the number which when reached they finally declare it to be CLL.
The reason I was absolutely certain way before diagnosis that I was headed toward CLL is because prior to my diagnosis in 2018 my Father had CLL, his Mother had CLL (my Grandmother), and her Father had CLL (my Great Grandfather). Having bet a game or two in my life, I knew that the odds were far too great for four in a row in a family to be coincidental.
I have read since then that it is not common, but there is a definite link within families. Supposedly it is ten percent of the CLL population, in which you can find more than one case of CLL.
Your Daughter sounds way too young to have CLL or pre CLL, but I'm not knowledgeable enough to say that. My understanding is that the average age at diagnosis of CLL is 70, but I do know from our group web site that some of us are in their forties and fifties. I can tell you that at age 17 I had Mononucleosis (Kissing Disease), and my case was extremely severe. I remember reading that many cases of Hodgkin's Lymphoma had Mono when they were younger.
Carl
I think you would have many responses here from members who are connected to other family members who also have/had CLL. In my family it’s my mother, brother and me.
I agree with Carl. I've come across many articles on the inheritance/genetic aspects of CLL and there have been many posters on here talking about how their grandfather, mother, sister has it, etc. I have 2 sons, so hope not. However, titian -- so many other things are so much more likely. In addition to iron, EBV, and other viruses and nutritional issues, depression can cause this, and a lot of kids this age seem to go through a bit of depression. Lastly, early pregnancy absolutely causes this type of fatigue, if that is even possible in her case. To me, her having CLL would be about as likely as winning the lottery, possible so oh so so unlikely.
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